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Friday, April 22, 2011

Not a good sign

20 weeks + 6 days, 4 weeks + 1 day post rupture

Things were hard on Aidan's day. It started the night before. After almost 9 days of no leaking and feeling like "hey, maybe I've sealed", I started leaking fluid again. It never fails. The night before I go to medical appointments and ultrasounds. It's awful. Worst of all was that last time I leaked, by the morning it had pretty much stopped. Not so this time...

So we arrive at the clinic for 8:45am after I'd had about 3 to 4 hours sleep. I'm seen fairly quickly and the tech gets all her measurements. Then we wait a bit and Dr. K. comes into see us after reviewing the scan. He starts out with the positive. My fluid levels despite leaking were 7.39 cm, adequate for lung development. Also, despite the placenta's VERY abnormal appearance, the uterine arteries continue to get good blood flow to the baby and there continues to be good blood flow through the cord. My cervix is shortening, considered 'borderline' at 2.5cm.

However, the baby is measuring quite behind. Dr. K. can't really tell us why this is, as the baby is getting good blood flow. I'm not surprised that the baby is measuring a little small...he always did, right from week 7, when he measured 6 weeks 2 days. However, some of his measurements are WAY further behind now...more like 2 weeks rather than 1. This concerns me, in that I wonder if something else is going on. I remember clearly from my NICU days that a 'normal anatomy scan' doesn't always mean there isn't subtle genetic defects and/or congenital abnormalities and sometimes these reveal themselves prior to delivery as 'poor growth'.

The growth of the baby was one of the big reasons we continued the pregnancy in Aidan's case. He always measured right on track, despite having NO fluid. We didn't feel that we could end a pregnancy where the baby continued to show signs of 'doing well' despite his poor environment. I fear that's not the case with Acorn. Dr. K. didn't seem too concerned about it, just said that it's something we'll have to watch (of course, what can he do about it? Answer: Nothing)...but in my mind it could be a game changer. I absolutely DO NOT want this baby to suffer and in my mind, poor growth is an indicator of suffering. It makes me very upset and less hopeful for Acorn.

Also to give you an indication of how damaged my placenta is, a normal FULL TERM placenta is anywhere between 2 to 4 cm in thickness. 4 cm is even bordering on 'too thick'. My placenta is currently (at 21 weeks!) SEVEN cm thick!!! This is an increase of 3 cm in 5 weeks!!! On ultrasound it looks more like a ball then a pancake. It's frightening and of course without fluid, Acorn is mushed up right against it. It's heart breaking and will likely only get worse.

Then we talked with Dr. K. about genetics. We first asked if he had ever seen a recurrent Breus mole. Answer: Nope.

Let's take a minute here and process that. He's NEVER seen this happen twice in once person. Ever. I'm his first. And this is a guy who when you search to the medical journal "Placenta" has 142 published articles to his name. He runs a placental clinic where he's seen thousands of pregnant women over his career. And I'm his first recurrent Breus mole.

Holy fuck.

Which brings him to the conclusion that it is in fact, genetic in origin. As he says, most diseases do have a genetic component and he and his lab buddies *think* they may know the gene responsible. It's called something like WINT2 (we didn't write it down, now I wish I had). Basically what he's offering us, is that at the time of delivery if the Bio Bank personnel comes and takes a chunk of my placenta, they may be able to tell whether A) this gene is present or absent within the placenta's tissues and B) if it's present, then is it actually 'turned on' and doing it's job. We were all agreeable to this plan. As he said, it means that if we decide to go for a 'next time', they might be able, through CVS screening around 11 weeks to tell us if this gene is doing it's job, giving us a better indicator as to whether I would (for the THIRD TIME???!!!) develop a Breus mole or not. I didn't ask him about pre-implantation diagnosis, but if we were able to detect this gene, then I wonder if we could do IVF and avoid a doomed pregnancy entirely? It would be something I'd definitely consider.

Then I asked whether my pPROM is directly related to the Breus mole, because really that's our biggest concern right now. He said that a lot of placental conditions can be associated with ruptured membranes. If the placenta's not functioning or forming correctly you often get bleeding and that can be a big cause of ruptured membranes. I did bring to his attention that I've had very little bleeding with this pregnancy so far, and I did have some 'weird' feelings in my cervix way back weeks 14-17 which could (?) have been my cervix funnelling or otherwise not working right. He agreed with me that I could have a secondary incompetent cervix and that the ruptured membranes might be in addition to the Breus mole and not a direct cause. On one hand I'm somewhat gratified to hear this (I wanted to yell, I KNEW IT!!!), but on the other "shit, another problem we might have to face again in the future, even WITH a perfectly normal placenta".

The plan now is to meet with the Bio Bank people and for them to get consent to take a chunk of my placenta when I deliver (Go right ahead, hack away at it. It's not like it's doing me or Acorn any good now). I'm a little nervous about delaying this meeting until our next appointment (May 3rd) because things won't be in place to collect the sample if I go into labour before then. The Bio Bank people have someone on call 24/7, but I've since learned via their website they need to collect the placenta sample within 30 minutes (!!!) of delivery. I can tell you, no medical personnel involved when I delivered Aidan was worried about placenta sampling at 30 minutes post delivery...they were worried about my tanking blood pressure, starting an IV and giving me antibiotics. You know, keeping me alive. I might e-mail Dr. K. about this, (despite his prior uninformative and less than helpful responses via e-mail) because it's bothering me a lot. I want this in place NOW...not almost 2 weeks from now.

Anyway, after our discussion with Dr. K. I met with Dr. S. He agreed that I should continue seeing Dr. K. as he's the placental specialist and has more experience with placental matters. We also asked that if we were to get pregnant again, would it be possible to see Dr. K. early in the pregnancy until the placenta is confirmed to be working well, and then switch to him, to more closely monitor my heart. He felt this was a reasonable plan and I'm glad. I like Dr. K. better and I would feel more comfortable with him reviewing me earlier 'next time'.

Then I had my ECHO. At least we can check that test off the list.

It happened after the ECHO tech left and I was getting dressed, ready to leave. I stood up.

And GUSHED fluid. Like a ton. It felt like a full cup's worth. Soaked my pad, my underwear and the front of my pants. If my life was a TV show and I was 37 weeks (which I would be cuz no one ever has a preemie or a dead baby on TV) they would have done a funny montage with me in a wheelchair being pushed to the hospital, me yelling at my husband how "this is all your fault", me labouring with all the blue draping around me, and then cut to shot of healthy infant. Yeah!

Instead, I started to whimper and cry, trying to mop up my pants in the ultrasound room. There it goes. All that fluid Acorn and I worked so hard to build up. The fluid that the doctor's are considering my 'one saving grace'. The one thing that was 'better' than my pregnancy with Aidan. All gone in a matter of seconds. Can I build it back up? Who the hell knows.

Brian hurried me to the washroom where I cleaned up as best I could and then, without seeing anyone else we left. I couldn't take anymore. It was my dead son's birthday, my current baby is in trouble, fluid is gushing out, I can't stop it and all I wanted to do was go home and go to sleep. So I did. But first, through my tears, I ate a cupcake in honour of Aidan. It was his day and I had to do something for him.

I'm feeling less hopeful. Maybe I'll seal over a bit and build up more fluid, but I'm still at risk of infection and my cervix is shortening, not a good sign. And my baby is measuring further and further behind despite getting good blood flow. Maybe it's measurement error, maybe it's not. Maybe it means something else is wrong, maybe not, but it's not a good sign. My placenta is getting thicker and thicker by the week. It's still getting good blood flow to the baby...but who knows how long that will last? Plus with all the clots building up, will the placenta start to detach anytime soon? Abruptions are deadly for baby and sometimes for moms too. And if I go into labour in the same way I did last time, I don't know if the Bio Bank people will be in time to collect the samples. I NEED to know if there is a way to avoid a 'next time'. It would heal my heart somewhat to know there IS a cause and it CAN be avoided. That it's not inevitable. That I might be able to have a normal placenta and a healthy, full term, baby (hell, I'd take a healthier placenta and a slightly premature but healthy baby).

Because honestly, I don't think Acorn is going to be that baby. I think too much is stacked against him.

Thank you again to everyone who sent pictures and messages for Aidan and us. They were all beautiful and so heartfelt. Definitely the highlight of my day.

17 comments:

Holy crap. I don't know what else to say! How much more can be stacked on top of you?! You must surely have the strength of 10 women to be holding it all together through this...I can't imagine having one grain of sanity left after what you have already gone through. Acorn has one incredibly tough momma that is taking care of him right now. I'm praying for your strength, sanity, and a whole lot of extra fluid for you right now!!

Emily I am so sorry and am hoping your 'maybe you'll build up more fluid' will come to be.Not that this is helpful but Dr K had never seen my shitstorm of events either but he is reassuring. I can see why you would prefer to see him first. I hope answers your email - he should have made sure there was a plan in place for you!

Thinking of you and Acorn and Aidan. I am sorry that Aidan's birthday didn't turn out how you had imagined on so many levels. I know that there are no words but I wanted you to know that I am thinking about you and your family.

I am thinking of you and little acorn and of course Aidan. I hope that everyone who reads your blog can join in positive thoughts for you and baby, prayers, or whatever it takes to see that he pulls through.

I'm so sorry, Emily. Sorry for all that you have already been put through and all that you are going through now. Please know my thoughts are always with you, Aidan and little Acorn. Sending hugs and love your way.

I agree with the other commenters...it's spectacularly unfair that so much is happening all at once. The first anniversary for Aidan and all of the worry for Acorn...just completely unfair. Sending positive vibes to you and including you in my evening prayers.

I found you through Hillary's blog. I am so sorry about what you are going through.

I just wanted to say that when I lost my son at 18 weeks, we already knew that we wanted to test his placenta. We did not have to get it to the special people you do though. But, within minutes of delivering the placenta an OB tech was sent in to take the sample and preserve it. If this is all that needs to be done before sending it to the Bio people then I would think that most hospitals would have this set-up if known in advance. I believe my dr told them upon my admission.I wish you only the best. God bless.

Aidan's Egg

Aidan in a Rainbow

Aidan's Day Flower

Aidan in Candles

Aidan's Letters

Aidan's Cupcake

About Me

Married, early 30s, Registered Nurse, former and current congenital cardiac patient, difficult pregnancy, lost my son at 23 weeks + 3 days in 2010. Had another nail-bitter of a pregnancy in 2011, but my daughter arrived alive and is now healthy. Here is what follows.